The GSNV Team wishes you all a wonderful holiday season🥳 As the end of our working year nears we celebrate the achievements of our team and community in 2024 and the strength and passion continuously presented to advocate for our most vulnerable individuals and their loved ones to live their best lives. In 2025 we look forward to the many opportunities to come together as a community and reflect on the success and opportunities of not only the last year but, of the 25 years since marking the new millenia! With Love, Monica Ferrie Danièle Noel Hollie Feller Malavika Vasanth Susie Roczo-Farkas
Genetic Support Network of Victoria
Public Policy Offices
Parkville, VIC 544 followers
For people living with genetic, undiagnosed and rare conditions to flourish and live their best lives
About us
The Genetic Support Network of Victoria (GSNV) was established in 1997 in response to a changing complex environment; in recognition of the importance of a broad consumer voice in genetic health; acknowledgment of a gap in existing support for many rare, undiagnosed and genetic conditions and to increase awareness of the challenges faced by people with genetic conditions and those who support them.
- Website
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https://www.gsnv.org.au/
External link for Genetic Support Network of Victoria
- Industry
- Public Policy Offices
- Company size
- 2-10 employees
- Headquarters
- Parkville, VIC
- Type
- Nonprofit
- Founded
- 1997
- Specialties
- Genomics in Schools , Genetic Counselling , Genetic Undiagnosed and Rare Disease Community Advocacy, and Genetic Support Network
Locations
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Primary
Get directions
MCRI
50 Flemington Rd
Parkville, VIC 3152, AU
Employees at Genetic Support Network of Victoria
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Susie Roczo-Farkas
GSNV Project Officer: Connecting Community & Research for Mutual Insight, and Volunteer for Very Special Kids
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Monica Ferrie
Creating access to the practical and pathways to the possible
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Hollie Feller
Passionate about enhancing the lives of those living with a rare or genetic condition
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Chloe Ong
Customer Service Consultant @ TSA Group | Health Admin, Customer Engagement, Problem Solving
Updates
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🌍 Universal Health Coverage is about ensuring no one is left behind, including the millions of #PLWRD. #Resolution4Rare
🌍Universal Health Coverage is about ensuring no one is left behind, including the millions of #PLWRD. Monica Ferrie, member of the RDI Council of Directors and CEO of Genetic Support Network of Victoria, highlights how collaboration is key to achieving this vision. 🤝 On this #UHCDay we call on Member States to support the #Resolution4Rare and ensure equitable care for all. UHC2030 - Taking action for universal health coverage
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🥼 Careers in Genomics: The Science Within Us is a digital program for primary and secondary school educators to improve students' genetic literacy and understand the real-world application of genetics through powerful human stories. It's an exciting time to learn and consider a career in genomics and our Careers video provides school students with an understanding of the diverse career pathways in genetics. Our thanks to the health professionals who participated in this video providing a snapshot of how genetics informs their roles and helps students understand an area of science undergoing massive transformation. Click here to learn more: https://lnkd.in/g4M2S6Rs #science #education #genomics #sciencewithinus Australian Genomics
The Science Within Us Careers Video
https://www.youtube.com/
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Genetic Support Network of Victoria reposted this
We’re thrilled to have Dr Euan Ashley from Stanford University in the US present “The Genome Odyssey” at our next DNA dialogue seminar on Thursday 5 December at 9am (AEDT). In The Genome Odyssey, Euan brings the breakthroughs of precision medicine to life through the real diagnostic journeys of his patients and the tireless efforts of his fellow doctors and scientists as they hunt to prevent, predict, and beat disease. Euan is Chair of the Department of Medicine at Stanford University, where he is the founding director of the Clinical Genomics Program, the Centre for Inherited Cardiovascular Disease, and the Catalyst Program for biomedical innovation. Learn more & register here: https://lnkd.in/gEPc98Jr #AustralianGenomics #DNAdialogue #SeminarSeries #genomics #research #precisionmedicine Stanford University School of Medicine
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The GSNV is proud to launch The Science Within Us a digital program for Australian primary and secondary students aimed at improving genetic literacy and understanding real-world application of genetics through powerful human stories. Designed in collaboration with Australian Genomics this educational resource engages students in an area of science undergoing massive transformation and impacting daily life. Click on our video to find out more: https://lnkd.in/gBfkHhVv and visit https://lnkd.in/g9TFzEgB to access this free resource Monica Ferrie Tiffany Boughtwood Victorian Department of Health Department of Education Murdoch Children's Research Institute (MCRI) The Royal Children's Hospital Hollie Feller #education #genetics #science
The Science Within Us
https://www.youtube.com/
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Genetic Support Network of Victoria reposted this
We’re thrilled that the Mackenzie’s Mission research project study has been published in the New England Journal of Medicine. Mackenzie’s Mission was a huge effort across the country. We offered prepair 1000+ testing and genetic counselling services to about one-third of the study’s participants. Nearly all of VCGS was involved in making this study a success. Thank you to all of our staff who contributed. A special congratulations to the named authors on the paper Martin Delatycki, A/Prof Alison Archibald, Anaita Kanga-Parabia, Clare Hunt, Crystle Lee, Isabelle Danos, Kate Scarff, Lana Giameos, Lauren Thomas, Marta Cifuentes, Meg Wall, Monica Ferrie, Nitzan Lang, Sebastian Lunke and Stefanie Eggers.
Almost one in 50 couples is at “increased chance” of having children with one or more of 750 severe genetic conditions, the final report into the ground-breaking Mackenzie’s Mission study has found. The findings, published in The New England Journal of Medicine, are from one of the world’s largest studies into reproductive genetic carrier screening at population level. Mackenzie’s Mission tested 9107 couples across Australia to see if they carried genetic variants that meant they had a one-in-four chance of having children with one or more of the 750 severe genetic conditions screened. Of those couples 1.9 per cent were found to be carriers, three quarters of whom used that information to inform their decisions about having children, including using IVF and selecting embryos unaffected by the genetic condition. The study was named after Mackenzie Casella, the daughter of Rachael and Jonathan Casella, who died of spinal muscular atrophy at seven months old. The project, administered by Australian Genomics and funded by the Federal Government’s Genomics Health Futures Mission, set out to find answers to the challenges involved in setting up a national government-funded carrier screening program. These included how best to offer it at population level, which genes to include, how laboratories report results, how couples respond once they learn they are carriers, and costs. The study leads were Professor Martin Delatycki AM (Victorian Clinical Genetics Services (VCGS), Murdoch Children's Research Institute (MCRI)), Emeritus Professor Nigel Laing AO (Harry Perkins Institute of Medical Research, PATHWEST LABORATORY MEDICINE WA and The University of Western Australia) and Professor Edwin Kirk AM (NSW Health Pathology, UNSW, Sydney Children's Hospitals Network). Read more on the Australian Genomics website: https://lnkd.in/gsRMzzty Read the abstract in the NEJM Group journal: https://lnkd.in/gEpEyKci Learn more about the Mackenzie’s Mission study: https://lnkd.in/gs5pmffj #MackenziesMission #AustralianGenomics #geneticcarrierscreening #reproductivecarrierscreening #genomics #genomicresearch #research
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Can you support Lewis and cheer him on as he completes the colour run for Children's Tumor Foundation this Sunday Nov 17 in Melbourne🏃 Find out more about this national event and key dates below and support children and families living with neurofribromatosis (NF) #raredisease #advocacy
My son Lewis has neurofibromatosis type 1, a genetic condition which causes a range of symptoms, includong tumours to grow on nerve tissue. NF can lead to a range of significant health issues including blindness, deafness, bone abnormalities, disfigurement, chronic pain, learning difficulties and even cancer. The signs, symptoms, and management of NF are different for each person with the condition, and there is no way to predict how mildly or severely someone will be impacted. The Children’s Tumour Foundation (ctf.org.au) are an amazing group of people who support and advocate for the NF community and provide funding for research into potential treatments and and hopefully one day cures for NF. Each year the CTF hold a Colour Run in Melbourne, Sydney and Brisbane as their premier fundraising event and to promote awareness of this rare condition. This weekend Lewis has the honour of being Captain of the colour run for the Melbourne leg of the Conquer NF in Colour event, and I’m hoping that some of you would like to either donate via the link below, or come down to Princes Park on Sunday morning for some colourful schenanigans. Any help at all will be greatly appreciated. If you would like to donate, you can use the link below https://lnkd.in/d4ww9CSp
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The GSNV and CEO Monica Ferrie welcomes and congratulates Alison McIvor as SWAN’s new CEO. We look forward to our ongoing and shared advocacy and vision including the many collaborative opportunities to strengthen the voices and capacity of our genetic undiagnosed and rare disease community. #genetics #raredisease #advocacy
We are excited to welcome Alison McIvor GAICD as SWAN Australia's new CEO! 🎉 Alison brings over 25 years of experience in strategy development, business planning, transformation, and advocacy across sectors like finance, construction, education, transport, and the not-for-profit space. Her expertise in project and program management, operations, and communications will be invaluable as we continue to grow and support our incredible community. Alison is also deeply passionate about the rare and undiagnosed conditions community, having served on advisory boards and committees for key organisations in the sector. We are thrilled to have her lead us into this new chapter, and we’re confident her vision and expertise will help SWAN Australia continue to provide vital support to families. Please join us in giving Alison a warm welcome! 🌟 #WelcomeAlison #SWANAustralia #Leadership #SWANFamilies #RareAndUndiagnosed
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It's our final week of October Practical Wellness Month. Join us for our final workshop this Wednesday 30 Oct as we understand the ways we can build successful online support groups for your genetic rare and undiagnosed communities. With experts in communications and support group leadership we welcome 2 guest presenters: Dr. Jennifer Beckett from University of Melbourne School of Culture and Communications discussing online community governance and moderation including mental health impacts of online moderators and, Tammy Gardner CEO of Huntington's Victoria offering the support group perspective on how to create a supportive, accessible and engaging environment within the evolving digital space. Support Group Leaders who want to enhance their online communities and share in their own experiences are encouraged to book here for this free online session: https://rb.gy/wipmpa Malavika Vasanth Susie Roczo-Farkas Hollie Feller Monica Ferrie Danièle Noel #raredisease #mentalhealthawareness #contentmoderator
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Thank you Matt Bolz-Johnson EURORDIS-Rare Diseases Europe and lauren roberts Rareminds for providing two very comprehensive presentations on the Rare Minds Matter survey and the EURODIS Mentally Healthy Toolkit co-designed with the rare disease community in the UK. The work done in the UK demonstrates the possibilities for improved and targeted mental health services for the Australian rare disease community and through the monthly RareNET Forums diverse support group voices can shape this advocacy priority for the GUaRD community. If you want to find out more about the October RareNET presentations, the GSNV's October Practical Wellness Month and more about the GUARD Collaborative please email [email protected] #raredisease #mentalhealth Monica Ferrie Emma Bonser Maya Pinn Hollie Feller Danièle Noel Susie Roczo-Farkas Malavika Vasanth Genetic Alliance Australia Syndromes Without A Name (SWAN) Australia Rare Voices Australia
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